Monday, October 2, 2017

Not Dead Yet Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.Living donation by persons with certain fatal diseases.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors. . .

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.

The Committee’s focus as it seeks to expand the donor pool is not on donor protection but on transplant hospital protection. Although the details of implementation will be left to other committees, the thrust of the proposal is on reducing scrutiny for certain donor deaths. The Committee feels that in some cases, harm to donor can be traded off against other factors. The Committee gets to where it wants to be by conflating conditions which can be chronic and disabling with fatal conditions, and then blurring everything into terminal. This brings to mind what James McGaughey, former executive director of Connecticut’s Office of Protection and Advocacy, has written in a somewhat different context, “physicians…did not understand the prospects of people with disabilities to live good… lives…and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability…people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers…respond to them. ”. . .

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Given the recent studies that many people who request assisted suicide are motivated by feelings of being a burden and other existential issues, the Committee seems to have joined those who see no reason to ensure that such issues are addressed by adequate home care, palliative care, counseling, peer contact and other supports. . . .

Along these same lines, the Committee references feelings of uselessness and insecurity as motivations for the subclass of living donors. (pg. 8) It lists as psychological benefits to the donor improved self-esteem and enhanced meaning in life. (pg. 12) . . .

All this has everything to do with medical/societal prejudices towards disability. Several of the conditions discussed in the proposal are deceptively depicted as fatal. They should more accurately be seen as chronic conditions which people must manage effectively and which are accompanied by some level of disability. People can live for decades with multiple sclerosis, cystic fibrosis (which is present from birth) or COPD and, indeed, remissions are possible with multiple sclerosis. Even with advanced neuromuscular conditions like ALS, the course of the disease and life expectancy are quite variable. Indeed, Duke University’s ALS Clinic is studying cases in which symptoms have partially reversed. . . .

However, good values can be perverted by bias or ignorance of the social context. The Committee is applying these values without any understanding of the disability medical experience – an experience that includes struggling for access to unbiased health care, being defined solely by one’s disability and fighting against “better dead than disabled” attitudes, an experience that wears on an individual.

It should be no wonder that some people diagnosed with ALS, who are too often given excessively grim prognoses and too rarely exposed to people who lead successful and fulfilling lives with respiratory support, feel that they cannot adapt. Yet the main difference between them and people with lifelong neuromuscular disabilities who have advanced to the same level of support needs is that they had less time to adjust and prepare.

Fortunately, OPTN’s Living Donor Committee seems to recognize that the proposal raises valid concerns. Our recommendation is that they go back and start over.